Let’s Talk About Death: Millennials and Advance Directives

Sarah Riad, College of Nursing and Health Sciences, University of Massachusetts Boston

Melissa Hickey, School of Nursing, Avila University 

Kyle Edwards, Uehiro Centre for Practical Ethics, University of Oxford

As advances in medical technology have greatly increased our ability to extend life, the conversation on end-of-life care ethics has become exceedingly complex. With greater options both to end life early and extend it artificially, advance directives have arisen in an effort to preserve patient autonomy in situations in which he or she becomes incapable of making a medical decision. However, most people—especially young adults—do not think to plan for such moments of incapacity and the potentiality of an untimely death. With a youthful sense of invincibility comes a lack of foresight that prevents us from confronting these issues. The reality is that unexpected events happen. When they do, it is often very difficult to imagine what a person would have wanted and make medical decisions accordingly on his or her behalf. In this post, we suggest both a transition from action-based to value-based advance directives and an interactive website that would make the contemplation of these issues and the construction of a value-based advance directive appealing to and accessible for Millennials, the 20-somethings of today. 

Consider a situation in which a young woman on her way home from university for holiday break is hit by a drunk driver, leaving her unconscious and paralyzed. Decisions regarding her care need to be made while she is unconscious. This difficult task is left to her family, who may be too emotionally involved to judge either her expected wishes in such a situation or her best interests fairly. Medical decisions are often a stressful source of anguish and guilt for those having to make them for another person, especially in light of the “increased number of alternative modes of treatment for common disease processes.”[1] For those close to the patient, a directive relieves them of the weighty responsibility of making difficult judgments on the patient’s behalf, including the family and the physician. It can also give the patient “comfort from the sense that their family and physician will not put them through endless treatment because they are unsure whether stopping a treatment accorded with their wishes” or because their family members cannot bear to let them go. [2] Cases like those of Nancy Cruzan and Karen Quinlan in which neither patient had documented wishes demonstrate the tremendous usefulness directives would have had by circumventing situations in which family and friends are forced to guess what the patient would have desired [3]. In both cases, there were arguments amongst family members regarding end-of-life decisions. Situations like these in which appropriate documentation is not in place can lead to decisions by family members that leave patients alive when they would wish to be dead and terminate life-sustaining care when patients would wish to remain alive.[3]

Yet even in cases where an advance directive is in place, it is not always clear whether it ought to be upheld. Consider a hypothetical case in which an older man, Joe, previously drew up an advance directive stating that if he develops severe dementia (and thus can no longer make medical decisions for himself) he does not wish to receive life-sustaining treatment in the case of accident or illness. Yet now saddled with severe dementia, Joe appears to be quite happy and content with life at his nursing home, despite the fact that his memory is poor and he is no longer capable of many activities. One day, he has a massive heart attack and needs to be hooked up to a ventilator, yet his advance directive clearly prohibits life-sustaining treatment. This scenario provokes many questions: if he had known that he could be happy while suffering from dementia, would he have constructed a different directive? If this is debatable, should his directive be respected? Is there ever a time when it is appropriate to override a patient’s previously stated wishes? If so, when and under what circumstances?

While the question of whether Joe’s directive should be respected is a separate debate, the key takeaway from this hypothetical situation is that even when individuals have the foresight to create advance directives, they are not always sufficient in the life-or-death situations for which they were written.  They do not provide all the information necessary to make a good decision about what the patient would have wanted if he were competent. What kind of further information would have been helpful? Consider if we knew that Joe had made the decision to refuse life-sustaining treatment if he developed dementia because he deeply valued his memory and high-level cognitive capacities. In this case, we ought to respect his directive since the advance refusal of life-sustaining treatment was based on his preference not to live without these faculties. If, on the other hand, Joe had created his directive because he valued quality time with his family and thought that dementia would impair these relationships, only to find that it did not, we ought to disregard the directive, as respecting the refusal for life-sustaining treatment would be in opposition to the underlying value upon which he wrote it. By having a deeper understanding of Joe’s underlying values, the medical community and his family are best able to serve his interests while preserving his autonomy.

Based on these considerations, we propose a value-based model for advance directives with guidelines for action rather than strict procedures. The aim of this model would be to help the patient discover and articulate the values and priorities he or she holds that would affect care at the end-of-life.

We suggest an online interactive questionnaire for the creation of these value-based advance directives. As each subsequent generation is increasingly technologically-oriented, this would be a relatable format that most people – particularly young adults who rarely consider these issues – would find easy to access and complete. This format dramatically lowers the barriers to entry for thinking about one’s own mortality and articulating personal values surrounding end-of-life care. As opposed to setting up appointments with a doctor and/or lawyer, it could be accessed rapidly and from the privacy of home, two determining features for a generation accustomed to having information and services at its laptop- or smartphone-clad fingertips.

In the interactive questionnaire, the individual would be given a series of scenarios that would help them discover their own values. These scenarios would be a type of guided narrative that helps him or her to think about abstract values as well as what types of treatments he or she would accept or reject and why. Values in the following categories would be explored:

o   Family and relationships

o   Memory and cognitive capacity

o   Speech and communication

o   Activities of Daily Living (e.g. bathing, toileting, feeding)

o   Independent Activities of Daily Living (e.g. shopping, meal preparation, financial management, housework)

o   Religion and spirituality

o   Sexuality

o   Hobbies and interests

o   Special wishes (e.g. organ donation, cremation, burial)

The interactive nature of the program would guide the participant through the deliberative process of discovering what he or she considers most important in end-of-life decisions. Additionally, the program would automatically generate a preliminary document expressing the patient’s wishes for treatment and the underlying values behind those preferences based on his or her responses to the scenarios. In Joe’s case, the document could have included a statement such as, “I care more about interaction with other people than about my ability to read. I want decisions regarding my care to be made accordingly.” Not only does this method provide a starting point for the individual to think about values, but it can also serve as a conversation-starter with family and friends regarding sensitive end-of-life issues.

The patient would then take the results of this process to his or her primary care physician the next time he or she had to go in for a check-up or an acute illness. A follow-up appointment could be made specifically to discuss the values discovered and clarify or edit the document as necessary, which would be made easier due to its online format.  A copy of the results would be kept in the patient’s chart. The physician, having a thorough understanding of the patient’s values, would then be competent to serve as a designated proxy on the patient’s behalf. Some may argue that “the average person…does not think of turning to physicians for assistance regarding advance directives…because physicians are seen as committed to life-extending treatment” and this is not always the patient’s wish.[4] If either the patient or physician feels uncomfortable with the primary care doctor serving as proxy for this or other reasons, another individual may be designated who thoroughly understands the patient’s values and would be able to make authoritative decisions in extraordinary situations on the basis of the values articulated in the advance directive. Currently, advance directives are given legal force when signed in front of two or more witnesses with a notary public. In the same way, patients could have their results notarized in order to make them legally binding.

Under this model, the patient has an opportunity, in the privacy of his or her own home, to begin thinking about end-of-life care and discover his or her values and priorities regarding sensitive, abstract issues that are often difficult to consider. The online format makes it easily accessible and easily editable, and the privacy of this information could be held to the same standards as many other websites and online databases that store health information. The independence of the program would significantly increase the ability to create an end-of-life care plan for those who are less able to afford an attorney for constructing an advance directive. Like current advance directives, wishes regarding which treatments to receive would be listed, including surgery, antibiotics, CPR, dialysis, ventilation, artificial nutrition and hydration, chemotherapy, and radiation. In addition to specific treatments, this model allows the for the patient’s fundamental values to be clearly understood and expressed – not just which specific health-related measures are desired divorced from the underlying reasons for why he or she wants a certain treatment or not. By providing a better idea of at what point the patient would no longer want to be kept alive, it would be better able than an action-based advance directive to provide care to individuals according to their wishes.

[1]Dan Brock, “Medical Decisions at the End of Life,” in Kuhse and Singer, eds., A Companion to Bioethics, (Oxford: Wiley-Blackwell, 2009), 2.

[2]Alexander Morgan Capron, “Advance Directives,” in Kuhse and Singer, eds., A Companion to Bioethics, (Oxford: Wiley-Blackwell, 2009), 8.

[3]George J. Annas, “ ‘Culture of Life’ Politics at the Bedside – The Case of Terri Schiavo,” The New England Journal of Medicine 352 (2005), 2.

[4]Capron, 4.